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Welcome to Our Parkinson's Place

I copy news articles pertaining to research, news and information for Parkinson's disease, Dementia, the Brain, Depression and Parkinson's with Dystonia. I also post about Fundraising for Parkinson's disease and events. I try to be up-to-date as possible. I have Parkinson's diseases as well and thought it would be nice to have a place where updated news is in one place. That is why I began this blog.

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Thursday, July 13, 2017

Owatonna SeniorPlace hosts educational meeting on Parkinson's disease

By RYAN ANDERSON randerson@owatonna.com
July 12, 2017

OWATONNA — As part of the 2017 Parkinson Education Series, presented by the Minnesota chapter of the National Parkinson Foundation, roughly three-dozen individuals at the Owatonna SeniorPlace learned more about the condition, ongoing research, and tips for dealing with the disease during a symposium Wednesday afternoon.

The Parkinson Foundation is working toward a world without Parkinson’s disease, but until that day, the organization wants to help those with the disease “live better,” said Erin McGee, program manager for the PF in Minnesota. The foundation offers “first-hand help” through “peer-to-peer connections,” as well as education programs to try and build understanding of the condition.

Parkinson’s disease is a chronic and progressive movement disorder that involves malfunction and death of vital nerve cells in the brain, known as neurons, which produce dopamine, a chemical that sends messages to the part of the brain controlling movement and coordination, according to the Parkinson’s Disease Foundation. As the condition progresses, the amount of dopamine produced decreases, leaving a person unable to control movement.

There is currently no cure for Parkinson’s, and the average age of onset is 60, with only 4 percent of individuals diagnosed before age 50, according to the PDF. Worldwide, 7-10 million people have Parkinson’s — 1 million in America alone — and 60,000 Americans are diagnosed each year.

Parkinson’s disease, named after James Parkinson, the English physician who described the degenerative disease, does impact men and women differently, which is why the Parkinson Foundation is pouring resources into researching the effects on females, McGee said. The foundation also provides information on Parkinson’s disease to the public in myriad ways, from books to their website to a recently-launched podcast series featuring some of the world’s foremost movement specialists.

While only a slightly higher percentage of males than females have Parkinson’s — it’s about a 55/45 percent split — the perception is that many more men than women have the disease, said Colum MacKinnon, an associate professor at the University of Minnesota, neurophysiologist, and director of the movement disorders lab in the department of neurology. Though men with Parkinson’s don’t in fact vastly outnumber women with the condition, men make up a preponderance of those who visit labs like MacKinnon’s to participate in studies, so “females are underrepresented in Parkinson’s research,” making this new initiative by the Parkinson Foundation all the more pivotal.

On Wednesday, MacKinnon presented updates on research from the UMN Udall Center of Excellence for Parkinson’s disease. MacKinnon has been studying Parkinson’s disease since 1992, and he noted that “we’ve come an immense distance since I started studying this.”

“My goal today is pretty simple,” to provide “you and your caregivers nuggets of wisdom to help you move better,” he added. “I study problems with movement,” wanting to “understand what causes the movement problem,” then translating what he and his fellow researchers discover to the public.

There are five “cardinal motor symptoms,” bradykinesia, the slowness of movement, akinesia, loss or impairment of the power of voluntary movement, rigidity, resting tremors, and postural instability, he said. Often those with Parkinson’s disease will have one or two of the cardinal motor symptoms, but not others — yet another illustration of the fact that “everyone with Parkinson’s is different,” so “everyone needs to be treated very differently.”

By the time cardinal motor symptoms manifest themselves, other symptoms people “have ignored for decades” have actually been present for years, he said. Fortunately, “we’re not ignoring them anymore,” as diagnosing those with Parkinson’s earlier means they can begin treatment sooner.

Conditions before diagnosis can include changes in sense of smell, as well problems with blood pressure and constipation, he said. Other potential early warning signs include tremors or shaking — obviously — suddenly smaller handwriting, a softer or lower voice, and frequent dizziness and fainting.

With medications like Levodopa — “still the gold standard” — and/or deep brain stimulation, also known as “brain pacemakers,” several side effects of Parkinson’s disease can be attenuated, which “is really good news,” he said. Movements can become faster, individuals can “go from A to B quicker,” muscles grow stronger, and tremors and rigidity can be ameliorated.

“The bad news” is that other pernicious effects of Parkinson’s are resistant to drugs and DBS, like struggling with balance and falling, transitioning from standing to moving, freezing of gait, and producing rapid movements, he said. Indeed, half the population of Parkinson’s patients MacKinnon and his team studied had trouble making two movements per second.

As the rate of movements becomes more rapid, the quality diminishes, he said. The simple fix, of course, is to “slow down” — walk slower, button shirts slower, etc.

Another tip for better communication is the Lee Silverman Voice Treatment, he said. It’s proven to be highly effective by “going big and loud.”

Those with Parkinson’s ought to “make large amplitude movements and do them with vigor,” he said. Big movements take longer than small movements, so “they keep you in your operational range.”

MacKinnon and his colleagues have also been studying freezing of gait for eight years, he said. When there’s a transition of movement, freezing can happen, because “going from standing to walking is actually extremely complicated.”

One aid is to rock until ready to take a step, he said. Additionally, if the feet are equidistant, one can move one ahead or back and then step.

With Parkinson’s, “you have great movements sitting in your brain,” he said. “The problem is getting to them.”

However, external sensory cues can unlock these movements, he said. Self-initiated cues for those with Parkinson’s aren’t effective, but visual cues are, even in subjects tested off-medication.

Something as simple as flashing a green light can get patients to walk, he said. “We don’t understand” why, but “the impairment goes away with cues.”

Simply telling a person with Parkinson’s “get ready, go,” or counting down “3, 2, 1, go” will spur them put of a freeze, he said. The cues can be visual, auditory, or touch, but the latter has been least effective, in large measure because older individuals tend to have a tougher time feeling taps on the skin.

The “get ready,” or the numerical countdown, before “go” are paramount, though, because they provide time for the brain to organize the movement, he said. “Always provide a warning cue” prior to the “go” command.

Fortunately, one can self-warn, he said. The patient can provide the “get ready” part, but the “go” mechanism needs to be another person or a device.

MacKinnon is “very interested” in REM (rapid-eye-movement) sleep behavior disorder, where individuals experience extremely vivid, nightmarish dreams during REM sleep and act them out — like choking a bank robber or fleeing a murderer — sometimes harming themselves or their partners in the process, he said. Muscles are supposed to be paralyzed during the REM stage.

RBD was actually discovered at the University of Minnesota, and “it’s a super important area” because those with the condition have an 80 percent chance of developing Parkinson’s disease, he said. “You get this decades and decades before diagnosis (of Parkinson’s), so we can see Parkinson’s before it ever shows its face.”

Of course, it’s pivotal to remember that exercise remains “the only treatment proven to slow the progression” of Parkinson’s disease, he said. The exercises need to have “intensity for you, a little bit of a push.”

“Find something you want to do, because you have to stick with it,” he added. If one stops the exercise regiment, all the gains made will be lost.

Erin Holker, a neuropsychologist from UMN Udall Center, discussed cognitive and mental health with Parkinson’s Wednesday’s, because “Parkinson’s is not just a disorder of movement,” she said. The same circuits involved with motor inefficiencies are also associated with non-motor symptoms, like cognitive concerns, the most common of which is executive function, i.e. planning, organization, and decision-making.

Other cognitive impairments can include slowed thinking, or “feeling like the world is moving very fast,” word finding problems — difficulty retrieving words — and spatial recognition, she said. “The longer the disease goes on, the more cognitive problems can increase.”

Memory and drawing ability decline slowly in those with Parkinson’s who don’t also have dementia, she said. However, if cognitive problems appear early, “rapid decline is more likely.”

Depressed mood can occur in 40 percent to 70 percent of people with Parkinson’s Disease, and anxiety — often in concert with depression — can be present in 40 percent of those with Parkinson’s, she said. Apathy is also common, as are impulse control disorders, but the latter can often be rectified by changes in medication.

Of course, in the same way it helps with movement, exercise also is beneficial for the mental side of Parkinson’s, she said. Those who exercise vigorously and regularly will be less stressed, less depressed, and — paradoxically — less fatigued.

Other strategies include carrying a small notebook, written reminders, checklists, and alarms on smart phones, she said. Those with Parkinson’s should be mindful of completing one task before beginning another, work in distraction-free environments, and ask for assistance in breaking down larger tasks into smaller pieces.

Getting a neuropsychological evaluation can also be prudent, she said. These evaluations focus on brain functioning, entail detailed and objective assessments of abilities, and utilize patterns of strengths and weaknesses to plan optimal treatment.

In addition to all three emphasizing exercise, McGee, MacKinnon, and Holker also noted the value of taking medications at the same time every day. Doing so will improve movement, cognition, and mood.

Owatonna does have a recently-formed support group for Parkinson’s Disease. The group meets the fourth Tuesday of every month in the Owatonna Public Library from 2-3:30 p.m.

I
just began writing Poetry for my newest blog: "P0ETRY:LIVING LIFE TO THE FULLEST
WITH PARKINSON'S DISEASE." It is mostly upbeat and sometimes funny. I hope you enjoy it.

I am a wife, mother and grandmother. I was diagnosed in 2004 by a Neurologist and a Neurologist- Movement
Specialist. Going back through my medical records, I had tremors since 1987. I
have dystonia of the feet and calves as well. In 2004, I had a major stroke and
was paralyzed on my left side. It took a year of Physical Therapy to regain 99%
back.

I feel strongly about
spreading the word about Parkinson's Disease as we travel throughout parts of
the United States. My husband Larry, married on August 2, 1966 to my best
friend.been married for 50 plus years. In 1967 he joined the Marine Corps as an enlisted Marine , then became a warrant officer 4 Selective and retired as a Capt serving over 22 years. ( A Mustang). I am fortunate to have the support of my family and friends. I also have a maltese named Spencer who is my Service dog.God has
truly blessed me and I am thankful. Parkinson's Awareness is important to
me. I continue to exercise, meditate and thank the Lord for each day. God Bless our military and their families. God Bless the USA. Semper Fi !

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